Documents - NTSAD https://mail.ntsad.org/index.php/resources/library?format=html Wed, 16 Nov 2022 12:18:14 -0500 en-GB hourly 1 NTSAD Research Initiative Program RFP 2023 https://mail.ntsad.org/index.php/resources/library/research/initiative/613-ntsad-research-initiative-program-rfp-2023?format=html NTSAD Research Initiative Program RFP 2023 https://mail.ntsad.org/index.php/resources/library/research/initiative/613-ntsad-research-initiative-program-rfp-2023?format=html sdimond@ntsad.org (Sydnie Dimond) NTSAD Research Initiatives Wed, 16 Nov 2022 12:18:14 -0500 NTSAD Research Associate Job Post https://mail.ntsad.org/index.php/resources/library/research/612-ntsad-research-associate-job-post?format=html NTSAD Research Associate Job Post https://mail.ntsad.org/index.php/resources/library/research/612-ntsad-research-associate-job-post?format=html sdimond@ntsad.org (Sydnie Dimond) Research Tue, 18 Oct 2022 11:14:58 -0400 2022 September NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/611-2022-september-ntsad-community-news-2?format=html 2022 September NTSAD Community News September 2022

In this Issue

Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/611-2022-september-ntsad-community-news-2?format=html September 2022

In this Issue

Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> sdimond@ntsad.org (Sydnie Dimond) NTSAD Community News Wed, 12 Oct 2022 15:17:13 -0400 2022 September NTSAD Community News https://mail.ntsad.org/index.php/resources/library/research/610-2022-september-ntsad-community-news-1?format=html 2022 September NTSAD Community News September 2022

In this Issue

Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> https://mail.ntsad.org/index.php/resources/library/research/610-2022-september-ntsad-community-news-1?format=html September 2022

In this Issue

Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> sdimond@ntsad.org (Sydnie Dimond) Research Wed, 12 Oct 2022 15:15:48 -0400 2022 September NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/609-2022-september-ntsad-community-news?format=html 2022 September NTSAD Community News Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> https://mail.ntsad.org/index.php/resources/library/e-news/609-2022-september-ntsad-community-news?format=html Imagine & Believe 2022

Thank You Sponsors

Day of Hope 2022

Myra Sack Shares Lessons from Daughter Havi

Brady Manning Honors Brother Dylan with Beyond Birdies

College Scholarships for Healthy Siblings

]]> sdimond@ntsad.org (Sydnie Dimond) News and Email - Community News and more Wed, 12 Oct 2022 15:11:07 -0400 Calendar Ad Form 2023 https://mail.ntsad.org/index.php/resources/library/fundraising/608-calendar-ad-form-2023?format=html Calendar Ad Form 2023 https://mail.ntsad.org/index.php/resources/library/fundraising/608-calendar-ad-form-2023?format=html sdimond@ntsad.org (Sydnie Dimond) Fundraising Thu, 15 Sep 2022 12:10:25 -0400 Eva's Butterfly Wishes NORD https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/607-eva-s-butterfly-wishes-nord?format=html Eva's Butterfly Wishes NORD https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/607-eva-s-butterfly-wishes-nord?format=html Diana@ntsad.org (Diana) Family Support Resources Wed, 31 Aug 2022 15:10:15 -0400 2022 August NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/606-2022-august-ntsad-community-news?format=html 2022 August NTSAD Community News

In this Issue

Day of Hope

Imagine & Believe

GM1 FDA Meeting

Clinical Trials and Natural History Studies

Raise Rare Awareness in September

Gottlieb Memorial Fund College Scholarship

NTSAD’s 2023 Annual Family Conference

TORCH Awards Honor Blyth Lord

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/606-2022-august-ntsad-community-news?format=html

In this Issue

Day of Hope

Imagine & Believe

GM1 FDA Meeting

Clinical Trials and Natural History Studies

Raise Rare Awareness in September

Gottlieb Memorial Fund College Scholarship

NTSAD’s 2023 Annual Family Conference

TORCH Awards Honor Blyth Lord

]]> sdimond@ntsad.org (Sydnie Dimond) NTSAD Community News Wed, 31 Aug 2022 11:35:11 -0400 NTSAD Day of Hope Fundraising Page https://mail.ntsad.org/index.php/resources/library/fundraising/events/605-ntsad-day-of-hope-fundraising-page?format=html NTSAD Day of Hope Fundraising Page https://mail.ntsad.org/index.php/resources/library/fundraising/events/605-ntsad-day-of-hope-fundraising-page?format=html sdimond@ntsad.org (Sydnie Dimond) Events Fri, 26 Aug 2022 15:51:28 -0400 2022 Gottlieb Sibling Scholarship application https://mail.ntsad.org/index.php/resources/library/support/sibling-scholarship-essays/604-2022-gottlieb-sibling-scholarship-application?format=html 2022 Gottlieb Sibling Scholarship application https://mail.ntsad.org/index.php/resources/library/support/sibling-scholarship-essays/604-2022-gottlieb-sibling-scholarship-application?format=html Diana@ntsad.org (Diana) Sibling Scholarship Essays Mon, 22 Aug 2022 17:16:10 -0400 2022 July NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/603-2022-july-ntsad-community-news?format=html 2022 July NTSAD Community News In this Issue

Letter from CEO Kathy Flynn

44th Annual Family Conference Highlights

Imagine & Believe

NTSAD Welcomes New Board President and Members and Recognizes Departing Members

Gray-Edwards Joins Advisory Council

NTSAD Honors Risa Asnen and CATS Foundation

Auburn University’s GM1 Research Has Positive Effect

Drive FORE Dylan

12th Annual Day of Hope

Thank You 2022 Conference Sponsors

Free Carrier Screening

Auction Items Needed!

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/603-2022-july-ntsad-community-news?format=html In this Issue

Letter from CEO Kathy Flynn

44th Annual Family Conference Highlights

Imagine & Believe

NTSAD Welcomes New Board President and Members and Recognizes Departing Members

Gray-Edwards Joins Advisory Council

NTSAD Honors Risa Asnen and CATS Foundation

Auburn University’s GM1 Research Has Positive Effect

Drive FORE Dylan

12th Annual Day of Hope

Thank You 2022 Conference Sponsors

Free Carrier Screening

Auction Items Needed!

]]> sdimond@ntsad.org (Sydnie Dimond) NTSAD Community News Fri, 05 Aug 2022 15:06:24 -0400 Imagine and Believe Sponsorship Benefits 2022 https://mail.ntsad.org/index.php/resources/library/fundraising/imagine-a-believe/602-imagine-and-believe-sponsorship-benefits-2022-1?format=html Imagine and Believe Sponsorship Benefits 2022 https://mail.ntsad.org/index.php/resources/library/fundraising/imagine-a-believe/602-imagine-and-believe-sponsorship-benefits-2022-1?format=html sdimond@ntsad.org (Sydnie Dimond) Imagine & Believe Fri, 22 Jul 2022 15:00:43 -0400 2022 June NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/601-2022-june-ntsad-community-news?format=html 2022 June NTSAD Community News In this Issue

Letter from CEO Kathy Flynn 

NTSAD Awards Grant for GM1 Gene Therapy Study 

NTSAD Awards Grant for Infantile

GM2 Rating Scale 

44th Annual Family Conference 

International GM1 Day 

Celebrating Havi Everyday 

Parent Perspective on Perspective on Grief and Loss

Father's Day

GM1 & GM2 Natural History Study Webinar

]]> https://mail.ntsad.org/index.php/resources/library/e-news/601-2022-june-ntsad-community-news?format=html In this Issue

Letter from CEO Kathy Flynn 

NTSAD Awards Grant for GM1 Gene Therapy Study 

NTSAD Awards Grant for Infantile

GM2 Rating Scale 

44th Annual Family Conference 

International GM1 Day 

Celebrating Havi Everyday 

Parent Perspective on Perspective on Grief and Loss

Father's Day

GM1 & GM2 Natural History Study Webinar

]]> sdimond@ntsad.org (Sydnie Dimond) News and Email - Community News and more Tue, 05 Jul 2022 16:35:49 -0400 Bentons Fund Form https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/599-bentons-fund-form?format=html Bentons Fund Form https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/599-bentons-fund-form?format=html Diana@ntsad.org (Diana) Family Support Resources Fri, 10 Jun 2022 09:27:56 -0400 Emmas Fund Form https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/598-emmas-fund-form?format=html Emmas Fund Form https://mail.ntsad.org/index.php/resources/library/support/family-support-resources/598-emmas-fund-form?format=html Diana@ntsad.org (Diana) Family Support Resources Fri, 10 Jun 2022 09:27:55 -0400 Imagine and Believe Sponsorship Benefits 2022 https://mail.ntsad.org/index.php/resources/library/fundraising/597-imagine-and-believe-sponsorship-benefits-2022?format=html Imagine and Believe Sponsorship Benefits 2022 https://mail.ntsad.org/index.php/resources/library/fundraising/597-imagine-and-believe-sponsorship-benefits-2022?format=html sdimond@ntsad.org (Sydnie Dimond) Fundraising Thu, 02 Jun 2022 14:12:48 -0400 2022 May NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/596-2022-may-ntsad-community-news?format=html 2022 May NTSAD Community News In this Issue

Letter from Kathy Flynn

Passage Bio GM1 Clinical Trial

GM2 Clinical Trial Update

44th Annual Family Conference

International GM1 Day

Newborn Screening Legislation

Recognizing Courageous Mothers

NTSAD Community and Board Members Advocate for Patients and Families

ASGCT 25th Annual Meeting

Free at-home COVID-19 Tests

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/596-2022-may-ntsad-community-news?format=html In this Issue

Letter from Kathy Flynn

Passage Bio GM1 Clinical Trial

GM2 Clinical Trial Update

44th Annual Family Conference

International GM1 Day

Newborn Screening Legislation

Recognizing Courageous Mothers

NTSAD Community and Board Members Advocate for Patients and Families

ASGCT 25th Annual Meeting

Free at-home COVID-19 Tests

]]> sdimond@ntsad.org (Sydnie Dimond) NTSAD Community News Tue, 31 May 2022 14:41:07 -0400 2022 April NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/593-2022-april-ntsad-community-news?format=html 2022 April NTSAD Community News In this Issue

Letter from Kathy Flynn

44th Annual Family Conference

Imagine & Believe 2022 Honoree

GM1 Awareness Day

Granted: A Wish Story

Remembering Stew Altman

Auction, Auction!

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/593-2022-april-ntsad-community-news?format=html In this Issue

Letter from Kathy Flynn

44th Annual Family Conference

Imagine & Believe 2022 Honoree

GM1 Awareness Day

Granted: A Wish Story

Remembering Stew Altman

Auction, Auction!

]]> sdimond@ntsad.org (Sydnie Dimond) NTSAD Community News Tue, 26 Apr 2022 16:17:13 -0400 2022 March NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/592-2022-march-ntsad-community-news?format=html 2022 March NTSAD Community News 44th Annual Family Conference

Myrtelle's Canavan Gene Therapy Receives Fast Track

STAT Act

TORCH Awards

Remembering Pioneers

Rare Disease Day

Importance of Carrier Screening

Continuing Nathan's Legacy

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/592-2022-march-ntsad-community-news?format=html 44th Annual Family Conference

Myrtelle's Canavan Gene Therapy Receives Fast Track

STAT Act

TORCH Awards

Remembering Pioneers

Rare Disease Day

Importance of Carrier Screening

Continuing Nathan's Legacy

]]> peg@pegdoyle.com (Peg Doyle) NTSAD Community News Thu, 17 Mar 2022 10:15:24 -0400 2022 February NTSAD Community News https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/591-2022-february-ntsad-community-news?format=html 2022 February NTSAD Community News In this Issue

Letter from Kathy Flynn

65th Anniversary

Clinical Trial Updates

NTSAD's Research Funding

Altman Family Highlighted

Rare Disease Day 2022

Collaboration Enables Carrier Screening

MFRF Gala and Honoree

]]> https://mail.ntsad.org/index.php/resources/library/e-news/ntsad-community-news/591-2022-february-ntsad-community-news?format=html In this Issue

Letter from Kathy Flynn

65th Anniversary

Clinical Trial Updates

NTSAD's Research Funding

Altman Family Highlighted

Rare Disease Day 2022

Collaboration Enables Carrier Screening

MFRF Gala and Honoree

]]> peg@pegdoyle.com (Peg Doyle) NTSAD Community News Thu, 17 Mar 2022 10:15:00 -0400